UC to J-Pouch Story

Archive for the ‘Friends’ Category

Warriors with Guts!

Posted by stephlws on October 28, 2008

Hello everyone!

I am writing to your in regards to a cause that is very near and dear to your hearts. We have all taken on the same monsters: UC and Crohn’s. We have spent nights clinging to our toilets (might as well have slept in the bathtub!), shed pounds from malnourishment because we were afraid to touch a scrap of food, and gained all those pounds back from the ridiculous amounts of Prednisone. We’ve had doctors sticking scopes, fingers, and other unfriendly objects in places we assumed were for “EXIT ONLY.” For some of us, the answer has been medication. For others, surgery. It may affect us all in different ways, but we share a common bond in our bowels.
As many of you know, I myself underwent j-pouch surgery since my UC wasn’t controlled by any meds (which is the case with most of us if I’m not much mistaken). While I am tremendously grateful to be rid of the disease, I also believe it is unfortunate for ANYONE to have to resort to such a difficult process in order to eliminate the “menace”. Some don’t even get to make the choice of having surgery. There are still a million good people out there who must overcome this obstacle every day of their lives. Many of you j-pouchers yourselves in various steps of the recovery process, so you know precisely what I mean when I say this. J-pouch surgery is no picnic (although it is significantly better than UC). As for Crohn’s, there’s still no known cure. This must come to an END!

Here’s where our cause comes into play:
Again, some of you are already aware, I am an honored teammate for Team Illinois in the Crohn’s and Colitis Team Challenge Half- Marathon. 32 team members are currently training and raising funds to run or walk 13.6 miles in Miami, FL come January. All funds go toward the CCFA. They will run and walk with other teams from all over the country to fight Crohn’s and Colitis. I have thrown myself into the fray to help raise for the Foundation. Although I initially signed up to participate and train in the race, the timing of my surgeries and recovery did not allow me the opportunity to do so, but I have found other ways of contributing.

I know economically, things are tighter than ever. It’s tough (especially for some of you as college/high school students!). Nevertheless, I feel that this is something we, of all people, must support in any way we can. We have been into the Lion’s Den. We have seen the deepest, darkest depths of our own selves and said, “I refuse to live this way.” Some people can’t make that choice. Some people still have to explain their disease and see the expressions of perplexity and, dare I say it, judgement. Others still have to take 15 or 20 pills a day just to stay in remission. Even other must still suffer the wrath of a puffy face and its repercussions every now and then to get it under control. We can help them all. We are all brothers, sister, friends, comrades in arms. We all drink our cups of pain. We have the chance to make it better for others to come so they don’t have to suffer the way we have.

I ask you please with all of my heart, as one who understands and has shared the pain, to make a contribution to the Team. Anything you can possibly donate will suffice, every little bit goes a long way, trust me.

Visit my web page to donate online or you can send me a check (make it out to the CCFA) at 10145 S. Komensky Ave Oak Lawn, IL 60453. Even if you cannot contribute, send this to your friends, your family, anyone you know who can help. There are other ways to promote the cause that don’t involve money. Spreading the word is one of them! This support will fund research, awareness, and patient and family services like Camp Oasis (for UC/Crohn’s patients under 18 to spend a week together in a safe, fun environment among fellow Crohnies and Colies).

There are plenty of other ways to help too! If you want to learn more about the program, you can visit:

http://ccteamchallenge.org It’s never too late to join in the fun and make a difference in your own special way!

We know what it means to feel alone in our struggles, and some of us also know what it means to have a second chance. We are stronger, wiser, and ultimately happier thanks to the obstacles we have overcome. Now we have the chance to make a difference, to improve, and to hope for a cure for future generations. Please consider making a small contribution. You all have made me a better person and helped me realize how important it is not to take anything for granted. I’ve found some great friends in whom I can trust and admire wholeheartedly: in Carmen, a spectacular joie de vivre; in Josh and Lisa, a barrel of laughs and smiles; in Dennis, a profound sense of self and others; in Kyel, an enthusiasm and sense of humor to be envied; in Mark and Megan, the courage to overcome anything; in Marisa, determination and pure joy; and in Sean, the unyielding optimism in making a tough choice just to name a few. Every piece of them has helped build me back up from my hole in the ground in some special way. Now I wish to help the others like us.
Join me in my effort to put a stop to these nasty, unpredictable diseases by checking out my site and making a donation:

http://www.active.com/donate/MI09illinois/stephanielewis1

Side note: For those of you in the Chicago area, Team Challenge and I are putting together a charity improv show for the cause. I have an improv troupe put together called the “Gut Busters” and we’re going to perform games and scenes similar to the show Whose Line Is It Anyway? The show will be in late November, just before Thanksgiving! I will keep you updated in the upcoming weeks! I would love to see some of you there!

So take a moment to check out the site, send it to a friend, put it on your blog perhaps. Support our cause and let’s make a difference together!

Thank you so much for your support! I hope you’re all enjoying everything life has to offer and that I’ll get to talk to you soon!

Best of health!
Stephanie

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Offering Support: What to Say in a Difficult Situation

Posted by jenellepower on October 21, 2008

I’m finally getting around to posting again after dealing with some new issues (Positive: returning to work full-time and going back to the gym. Negative: unforeseen financial ramifications from being sick and my first appointment with the j-pouch surgeon where I was told it’s not clear that I don’t also have Crohn’s, so the OK for the next surgery is pending the results of another pathologist reviewing my case).

I’ve been thinking a lot about what others say to me. I realize it can be a very difficult situation and people are unsure how to react. I’m also aware that I do not always say the

Here is a picture of me about 5 months post-surgery.
Here is a picture of me about 5 months post-surgery.  I'm a bit thinner and have less hair but am starting to look normal again.

most appropriate thing in every situation, though when I’m in unsure, I

tend to lean toward not saying enough rather than saying the wrong thing. That isn’t necessarily better, just a natural tendency of mine.

So here are some points/tips regarding what to say to someone who is going through the surgery process (or at least what I would like to hear – I’m sure others having differing opinions) and possibly in other situations:

1. Don’t predict the future. Telling someone that everything will work out isn’t necessarily helpful. At times, it can feel like you’re downplaying the struggle that the individual is facing. For example, now that I’m worried about my pathology report, people say things like “I’m sure it’ll be fine and you’ll get the next surgery.” I don’t find that resurring at all. If the surgeon doesn’t know, then you don’t know. Something like, “I hope it works out for you” or “I’m sure the waiting must be really difficult” would be much more helpful.

2. Do not try to show empathy by comparing your own experiences to mine. I’m not saying that other people don’t also have difficult experiences or that because my experience was so horrible that no one is permitted to complain about their own difficulties. I find it odd that some people are very hesitant to even mention feeling sick or tired around me. The fact that I am so sick does not make you less sick. However, when I am sharing my experience at the hospital, for example, telling me about your trip to the ER with a migraine is not helpful. Just listen and respond, don’t compare. The exception is when you actually experienced the same illness and are comparing/contrasting your experiences. I say to my partner that “unless someone has had their intestine threaded through their abdomen, they just don’t understand”.

3. Acknowledge other people’s feelings without judging. Often when I’m sharing an experience or a recent problem, I just want someone to say something along the lines of what psychologists call Reflection of Emotion. For example, “That must be really frustrating” or “Poor you, that must be difficult” or even “That must suck”. It doesn’t have to be eloquent; it just has to show you’re listening to the situation. Never tell someone they shouldn’t feel the way we feel. We have little control over the emotions we experience in reaction to an experience.

4. Follow the lead of the person who’s sharing their experience. This is relevant both to the amount of information the person wants to share and the topic the person wants to focus on. Try to be sensitive to what a person is telling you. If a person is providing vague answers, don’t push for details they don’t want to share. I think this is also applicable to those close to someone who has had the difficult experience. My partner has found himself in situations where he has been pressed for information about my illness that he was not comfortable sharing. In addition, I sometimes find myself repeating the same issue in a conversation. If someone continues to bring up the same subject repeatedly, then perhaps they feel that issue is unresolved for them or maybe they would like to talk about it further.

Posted in Friends, Support Systems | 5 Comments »

Types of Support

Posted by jenellepower on September 30, 2008

I think many people feel a natural inclination toward not wanting to bother other people, to put them out of their way, to cause them any inconvenience. Being sick has changed this inclination somewhat. Perhaps some of you reading this post do not have UC yourself but are close to someone who does and you can chime in on this theory, but I often get the sense that family and friends are relieved to have something to do that will help. My view is that it is very difficult to watch someone struggle with illness and be unable to do anything to help them, so that being given a task that they know will help make you a little more comfortable is welcome. For example, people seem very eager to help with things like getting food, giving rides, bringing books and movies. They seem thankful to know what to help rather than burdened by the task.

 

Types of support can be broken down into 2 major categories: (1) tangible (e.g., rides, food); and (2) intangible (e.g., emotional support, spending time). I found it important to figure out who was good at what and then look to the appropriate people for what they are good at/what they are comfortable with. In addition, it was important to figure out what I was comfortable with receiving from whom. I really wanted most of my emotional support to come from my partner and certain friends, so I would discuss those issues with them and avoid those issues with other people. My brother likes to be the protector and to take care of things, a role I’m comfortable with, so I would often ask him for rides or to take me out in my wheelchair when I was in the hospital and couldn’t walk.

 

Intangible support can be broken down further into informational support (information from an expert or from another individual who has had the same experience – probably why most people are reading this site) and emotional support (general reassurance that can come from anyone whether they have specialized knowledge or not). Emotional support is very, very important (of course!) but I have found that hearing about other’s experiences and having the opportunity to ask questions of another person who has had a similar experience to be invaluable. While many people can sympathize, there are few who can truly empathize, and that should can be a very beneficial experience.

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Friends said: “Wish We’d Known”

Posted by mark on May 23, 2008

Last night some friends came into town and we went out for a great Italian dinner. We got to talking about how much things have changed, and how I weigh 140 pounds now 5’6″. Just saw my weight, my UC weight was around 120-125. They were saying how they felt bad that while I was so sick and going through the medicine trials, and all the coping to prepare for surgery that they weren’t there more to support us. They said, “we knew you were sick, but were so involved in our own lives.” We just tell them we had tons of support once people really started realizing how sick I was. Megan mentioned that now we and they know that if a friend is sick and not getting better, get in there, ask questions. If you show real interest and they need the support they will respond.

Side Note Pouch Related: Yes, we had wine. Yes, I do drink some with my jpouch. This question is often asked about whether I drink with my pouch or not, just too much will upset me just like anyone!

Posted in Friends, Support Systems, Ulcerative Colitis | Tagged: , , | Leave a Comment »

UC to J-Pouch Surgery

Posted by mark on May 11, 2008

                                 Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction (a jpouch) with a temporary loop ileostomy until the jpouch heals (‘takedodwn’ is 2nd surgery).   Step 1 was done in early July 2007 and he was in the hospital for 5 days .  Thankfully, he experienced no complications from this major surgery.   Step 2 surgery will happen after step 1 recovery.   See on the right side there are 3 series of Photo Journals documenting the three stages of Mark’s surgery process. Click on Photo Set 1: Surgery Colectomy to see the full set of photos and journal

 

Mark had Ulcerative Colitis (pancolitis) for 7 years (diagnosed at 24 years old, surgery at 31 years old), an active flare for 6 years with little relief from medicine (you name it, he tried it); 3 years into the flare the GI recommended surgery, it took another 3 years for Mark to committ to the surgery.  Many dietary and herbal options were tried as well.  Through this process it was important he was 100% sure he had exhausted all his options so that when he decided to have the surgery, he wouldn’t have any regrets.  It was a HUGE decision to make, and it was important to do it when Mark was sure all his options had been exhausted.  The reason it was so important to know this surgery was 100% the right option is because there can be many complications with this surgery and life with a jpouch or ostomy.  This has been the best decision for his health and quality of life.   Click on Photo Set 2: Inbetween Surgeries to see the rest of the recovery and life with a bag..      

 

In simple words, Mark’s disease, Ulcerative Colitis (severe pan-colitis) made him have chronic diarrhea, bleeding, and urgency.  Then the related symptoms from those main symptoms were of both physical and emotional in nature.  The surgery he had removes his entire diseased colon (large intestine) and rectum, and creates a new holding tank of stool out of his small intestine (called a jpouch).  Go to this site here if you want more info:  J-Pouch Illustrated.  And  Click on Photo Set 3: J-Pouch Surgery to see the full set of photos and journal.     

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Posted in Family, Friends, Ileo-anal anastomosis, Ileostomy, j pouch pictures, j pouch surgery photos, J-Pouch, Jpouch, Jpouch Surgery, living with j pouch, living with j pouch photos, Living with jpouch, Photos, Support Systems, Ulcerative Colitis | Tagged: , , , , , , , , , , , , , , , , , , , , , , , , | 31 Comments »